A Taste of Folly

 

hoodoo headquarters

Outside of Hoodoo Headquarters

11: 10 a.m. Saturday 16 January 2016

As the sun arcs across the bluest of skies on this glorious Saturday of a three-day weekend, why squander my benevolent mood by overturning the rock of US politics and commenting on the spectacle of the scurrying vermin underneath?

Let’s not go into Trump and Cruz bouncing off the ropes of Thursday’s debate delivering forearms and leg kicks like Jessie Ventura and Nikolai Volkkoff.

Let’s not revisit the pairing of Lindsey Graham and Jeb! standing awkwardly abreast at yesterday’s endorsement like Muff and Jeff .

jeb and lindsey

photoshopped cartoon by WLM3

And what about this century’s remake of the 1972 Democratic contest with Hillary Clinton in the role of Edward Muskie and Bernie Sanders playing George McGovern?[1]

Enough! Already I feel dyspepsia roiling the previously pacific pools of my stomach acid.

No, I’m headed to the closet to don my pith helmet for another episode of “Hoodoo Anthropology.” Today, my adopted hometown Folly Beach celebrates its annual culinary extravaganza a “Taste of Folly, which I’ve never checked out, so I’m curious to see what type of crowd the festival attracts. You would think attendees might be a bit more subdued than the roisterers who descend for Folly Gras and Follypalloza, but frankly, I dunno.

What I do know is that the streets have been cordoned off, draught beer is flowing from sidewalk taps, and, of course, the chefs of Folly have taken extra care to present their signature dishes.

1:30 pm

Your intrepid reporter/anthropologist (IRA) and his spouse/assistant (SA) park their bikes at Chico Feo. Charlie, bartender extraordinaire, informs them that a bluegrass trio will be performing at 5, and that the owner/proprietor/chef (OPC) Hank Weed has set up a station offering a taste of Chico on the main drag that bisects this seaside community.

We cover the block to Center Street on foot.

IMG_2495

Over time, your IRA has developed mild anxiety when enmeshed in the amoeba-like pulsations of a crowd. SA Birdsong is hungry, a happy coincidence, but the lines for food are long along the bustling thoroughfare. As luck would have it, the queue for the Jack of Cup’s (JOC) curry is manageable, so the two split up; SA Birdsong procures two bowls while IRA goes inside the saloon to obtain a beer.

As sometimes happens in small villages, sitting right outside of the JOC are two friends, Larry and Jed, who offer an area of the table where SA and IRA can stand and enjoy the absolutely delicious combination of rice, potatoes, curry, peppers, etc.

curry.jpg

Jack of Cups Curry

Since Larry has been on site since “the crack of eleven,” he has procured a wristband that allows him to transport beers as a pedestrian.

wrist band

“Since when do you need a wristband to drink at a Folly festival?” IRA asks.

“It’s new this year,” Larry says. “It’s not too bad. Costs a buck. They make it efficient.”

“Maybe so, “ IRA thinks, “but here’s another instance of government complicating the lives of citizens.” He wonders where Cruz, Trump, and Bush might stand on the issue.  No doubt nanny staters Bernie and Hillary are all for it.

As IRA enjoys his beer, someone approaches him from the back and begins to tenderly massage his shoulders. Out loud IRA wonders who it might be — Emmylou Harris? Chrissie Hynde? Margo Timmins? Ambrosia Parsley?

No, it’s Vinnie Folly Beach’s most prolific songwriter.

vinny

Vinnie

“You know what,” Vinnie says, “I’m going to get drunk today.”

IRA: “You are?”

Vinnie [emphatically]: “Yes I am. You know why?”

IRA: “Nope.”

Vinnie: “Because I got drunk last night, and I can’t get over it.”

Two beers are long enough for IRA to determine that the visitors for a Taste of Folly are very much like the visitors to the other festivals. Bands play, like at any other festival. There’s a Jump Castle (JC) for the kiddies, like at any other festival.

Bottom line: the festival goers seem to be having a fairly good time.

3:41

SA and IRA arrive home safely via bikes. Decompression time before Chico Feo 5pm bluegrass trio.

[1] Dream tickets: Sanders and Sharpton vs. Cruz and Cotton in a “the-center-cannot-hold” contest.

Dealing with Cancer: Oy versus Om

Tenzin and Woody

Tenzin and Woody

 

Let’s face it, in this artificially flavored, dioxin-laden world of ours, either you or someone you dearly love is going to get cancer, especially if you manage to dodge the jihadists’ and nativists’ bullets to live long enough.

Obviously, people deal with cancer in different ways. Everyone from scientists to your Aunt Tessie will tell you to be positive, which, of course, is good advice, if not all that easy to take, especially if you’re facing chemotherapy.

For the last 17 months, my wife and I have shared our lives with a particularly rare and more-often-than-not fatal form of lymphoma known as Peripheral T-Cell Lymphoma, Not Other Specified, or for shortness sake, PTCL-NOS.

Essentially, you can deal with cancer in two ways, the Dalai Lama way or the Woody Allen way, so I thought I’d recap my wife’s journey of the last year and a half focusing on her husband’s behavior, imagining him as either the Dalai Lama or Woody Allen so you can decide for yourself which role you might play if you ever face similar challenges.

9 July 2014

Woody Allen, husband of Judy Birdsong, spends the morning cleaning the house preparing for guests, an artist friend and former colleague who’s bringing an Italian mother and her two teenaged sons to go kayaking.

Judy has gone out “to run some errands,” and Woody is getting somewhat peeved because she’s been gone so long and has left so much of the housework to him.

Finally Judy calls.

“Where have you been?’ Woody asks.

“Getting a chest x-ray.”

“A chest x-ray? What for?”

“I have this lump near my breast bone. The doctor thinks it’s probably just some bone outgrowth. No big deal.”

“Oh, my God,” Woody thinks, “she’s got lung cancer!”

* * *

Tenzin Gyatso, husband of Judy Birdsong, enjoys picking up each individual knick-knack from the shelf and gently rubbing the dust cloth over its surface. Although he knows Judy’s getting a chest x-ray, he concentrates on the task at hand, gently returning the clay statuette of the Indian mother to her place on the shelf next to the hand-painted Mexican fish.

* * *

That evening around six, the phone rings. Woody, upstairs in his study, sees on the phone’s screen that it’s the doctor’s office. He picks up the receiver just as Judy does but doesn’t hang up.

He hears: “The x-ray is inconclusive. It’s cloudy. Have you had any fever? Coughing? We don’t see a mass, but you have something called a pleural effusion, that is, fluid in your lungs, so you’ll need to come in tomorrow for a C-scan.”

Woody hangs up the phone and immediately googles “plural effusion.”

Numerous medical conditions can cause pleural effusions. Some of the more common causes are:

  • Congestive heart failure

  • Pneumonia

  • Liver disease (cirrhosis)

  • End-stage renal disease

  • Nephrotic syndrome

  • Cancer

  • Pulmonary embolism

Lupus and other autoimmune conditions

Woody spends a very miserable night, the worst one since his last night in jail (c. 1978), tossing and turning and speculating just what horrible type of cancer Judy has. Finally, because she’s had no symptoms, Woody becomes convinced that it’s metastatic ovarian cancer.

* * *

That evening around six, the phone rings. Tenzin, upstairs in his study, sees on the phone’s screen that it’s the doctor’s office. He waits to see if Judy picks up, and she does.

After the conversation, she comes up and tells him the x-rays weren’t clear, that she needs a C-scan.

He takes a deep cleansing breath, then exhales slowly.

11 July

The C-scan did detect a mass, “a primary cancer probably a lymphoma,” according to the radiologist. Woody and Judy arrive at Roper Hospital for Judy’s initial visit with her oncologist. When they arrive, they discover the appointment is at a different facility across town, so they rush to their car and take off. Even though the receptionist has assured them they have enough time, this soundtrack plays in Woody’s mind.

 

They do arrive on time, and the oncologist, an acquaintance, the husband of a colleague of Woody’s, is a calming presence. He shows them the tumor on a screen and agrees that it looks like lymphoma, and says that’s what he hopes it is because lymphomas are curable. He introduces them to the paradox that the faster a cancer grows, the easier it is to kill.

Woody goes home and googles lymphomas, which indeed are very treatable if it’s the B-cell variety. T-cell lymphomas are a different story.

15 July

While Judy’s out kayaking with Tenzin, the oncologist calls and tells Woody they need to run about a thousand new tests on Judy to find out “what type of t-cell lymphoma we’re talking about.”

“Oh no,” Woody says. “T-cells are harder to cure, aren’t they?”

“They can be,” he says tersely.

When Judy returns, she can see it on Woody’s face.

“What’s the matter?”

He tells her. For the first time they weep together.

20 July

Tenzin has put Woody in a strait jacket, jammed a sock in his mouth, and locked him in a closet so he can call his sons and tell them the bad news. He also calls his siblings and closest friends.

Judy is stoic as well, suffering through a barrage of tests without a complaint.

They nervously wait to see how far it’s spread.

22 July

Good News! It’s Stage 1, confined to that one tumor. No bone marrow involvement. The treatment will be aggressive. 96-hour continuous hospital infusion, two weeks off, then another blast. There will be 6 to 8 cycles, then perhaps a stem cell transplant and even after that radiation.

28 July – Early December

Judy on the 5th Floor Balcony of Roper

Judy on the 5th Floor Balcony of Roper

Although Tenzin can sometimes hear muffled sounds from Woody’s closet, he – Tenzin – is very much in control. During hospital weeks, he wakes up at 5, walks their doomed dog Saisy, showers, etc., and delivers the paper to Judy on the 5th floor of Roper and sits down to enjoy a cup of coffee. Then he shuffles off in his blue footies, down the hall to the elevator, hitting the first floor, greeting the staff coming on as he heads to the parking garage and to work.

After only four days of chemo, the tumor has shrunk so much that the oncologist says he wouldn’t know it were there by external inspection.

Of course, everyone loves Judy because of her courage and exquisite manners. The nurses try to see to it that she gets the rooms that look out over Charleston Harbor. She walks a lot, dragging the chemo-shit along with her. She continues her work as a school psychologist from her hospital bed, and in the third week goes to work in Berkeley County wearing a wig. In the afternoons when she’s in the hospital, Judy and Tenzin sit on the balcony and note the beauty of the light as it falls upon the steeples of the city.

In October on a Friday, Tenzin returns from work to find a voice message from the oncologist. He’s delighted to inform them that Judy’s scan has come back all clear; there’s not a trace of cancer.

Nevertheless, they’re going to continue for two more cycles of chemo, culminating in a grand total of 6.

Late December 2014 – January 2015

Tenzin’s mother has had a stroke as Judy’s preparing for a stem cell transplant. Tenzin allows Woody to come out of the closet to google stem cell transplants, but marches him right back in there afterwards.

One morning they come downstairs to find that Saisy has died during the night. Tenzin and his neighbor Jim load Saisy’s carcass in the back of Judy’s SUV (Tenzin’s Mini isn’t an option), and she drops Saisy off at the Vet’s to be cremated. She then drives on to work as Tenzin does the same.

Over the next week, Tenzin tries to make it to his hometown to see his fading mother while meanwhile Judy suffers the worst part of her treatment, bone-marrow killing doses of a different type of chemo that incapacitates her.

When Tenzin’s mother dies, Judy’s very ill; she can’t attend the funeral because she’s been hospitalized.   The good news is that Judy’s sister and sister-in-law have come to help. Despite all the negativity, spirits are somewhat high.

February – March 2015

Scans again clear. Time for radiation, which is no fun, but it’s much better than chemo.

June 2015

Judy’s and Tenzin’s son is getting married in June, right after another scan. Woody, who has been released from the closet but remains under house arrest, thinks the scan should be put off until after the wedding, but Tenzin and Judy disagree. How great to hear the news beforehand they say.

But they don’t hear the news. Woody is not allowed to come up to DC for the festivities (though he does text twice). The wedding week is wonderful as Judy and Tenzin reunite with loved ones and enjoy interacting with their new in-laws. All agree the ceremony and reception are a blast.

When Judy and Tenzin return to Charleston, they learn the scan was “all clear.”

17 December 2015

Judy goes in for her six-month scan. Woody has been sneaking around googling, looking for PTCL-NOS success stories, and under that heading what’s below is all he can find:

07/08 DX Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI

08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)

02/09 Relapse.

03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles

07/13 Relapse/Suspected Mutation.

08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. Watch & Wait.

09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.

10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.

10/25/14 Clinical trial of Alisertib/Failed.

01/12/15 Belinostat resumed/Failed 02/23/15

02/24/15 Pralatrexate/Failed 04/17/15

04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine involvement.

04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.

06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.

BMB reveals Myelodysplastic Syndrome (MDS), technically a third cancer.

07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.

07/16/15 Total Body Irradiation.

07/17/15 Haploidentical Allogeneic Transplant receiving my son’s peripheral blood stem cells.

07/21-22/15 Triple dose Cytoxan + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.

07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.

08/04/15 Engraftment official – released from hospital.

08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.

09/21/15 Acute skin GvHD arrives. DEXA scan reveals osteoporosis.

09/26/-11/03/15 Prednisone to control GvHD.

To date: 17 chemotherapeutic drugs in 8 regimens. 4 of those drugs at least twice.

Knowing the redemptive value of suffering makes all the difference.

Woody also discovers that the median time for relapse is 6.7 months after primary treatment, and it’s been seven months since Judy’s ended. Plus her SED rate is way high at 38 (20’s normal). Woody googles for possible reasons for high SED rate. “Cancers: lymphoma, leukemia.”

18 December 2015

Judy tells Woody (who’s wearing a Tenzin mask) he doesn’t need to accompany her to her 3 o’clock appointment.

As soon as she leaves for work, Woody clobbers Tenzin over the head with a walking cane and shoves him in the closet.

Woody goes to work and grades one set of exams, attends a brunch, then goes home at one-thirty and tries to take a nap.

He falls into a fitful sleep but awakens.

The clock crawls. Three finally arrives. Why didn’t meet her there? Imagine a text message. Or if it’s bad, wouldn’t she call? Imagine her driving back by herself knowing. Poor thing. 3:05. Friday’s NY Times crossword puzzle. It’s impossible. 3:15. He imagines Judy being weighed, getting her blood pressure taken. 3:30, no word. 3:35 goes down to play solitaire. 3:50. Knows Judy might get irritated but calls.

She hasn’t been seen yet!

4:05; Billie Holiday’s text ring tone “Comes Love” sounds. He sees ”scan’s all clear” on the screen. Screams Yes!! Literally dances a jig. Judy calls. “Yes!” He texts his sons “Yes!” He texts friends. “Yes!”

He rides his bike down to the Jack of Cups where he finds the owner Nick sitting at the bar with Tyler, a Chico Feo bartender, sitting next to him, and Samantha, a lovely tattoo-covered “girl next door” stationed behind the bar. He shares the good news. Larry comes in. Lesley, Nick’s wife comes in. They all high five. Nick disappears and returns with six shots.

They raise their glasses and chug.

Meanwhile, Tenzin is just coming to back home. He walks slowly up the stairs to his study and takes from the shelf The Selected Poems of WH Auden. He looks at the index of first lines, flips to the sought after page, and reads:

 

That night when joy began

Our narrowest veins to flush,

We waited for the flash

Of morning’s levelled gun.

 

But morning let us pass,

And day by day relief

Outgrows his nervous laugh,

Grown credulous of peace,

 

As mile by mile is seen

No trespasser’s reproach,

And love’s best glasses reach

No fields but are his own.